#52406 12-01-2007 01:03 PM | Joined: Feb 2007 Posts: 8 Member | OP  Member
Joined: Feb 2007 Posts: 8 | I've not posted for some time.
Need to talk to someone, thats been here, that knows how hard it is.
Mum finished radiotheraphy in April 07, been a hard journey sionce then, many side effects, so painfull to watch.
Told in August that visually by looking in her mouth it had gone, and it was all good.
September scan carried out, October scan results scan show scare tissue or cancer is back.
November Biopsy
Friday 29.11.07 results show CANCER IS BACK, no option of treatment "things have moved on now , maybe less than 6mts, we will aim to give you a good and dignified death"
I knew this was coming, Mum knew it was back and had told me for the last 2/3 mths.
Just hearing the doctor confirm it made it real, until then I did not have to face the reality.
My BIG FEAR, she will have a bad death, but how do I prepare for what will come.
She so thin, her breath smells, the doctor said she has bateria and mould in her throat, due to her not swallowing anything.
She is also amazing, she just tells me to be brave and at least I have sometime to prepare, how can I prepare, how come she never cries, she tells me she hopes she dies soon as she is scared of being in pain.
Talking here helps but the tears just roll, I guess they have to come out sometime. | | | 
#52407 12-01-2007 01:21 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Andrea
I am sooo sooo sorry you have to go through this. this disease is horrible and feels as though it shows no mercy .
It sounds as though mom is a pretty amazing and pretty strong woman . And you know I bet in her OWN time she does have her own moments. But being a mom we always want to protect our children and we don't want them to suffer , especially watching us go through somthing . It real hard to be a MOM and be sick . I have 5 kids ...all under 14 and when I was sick I wanted to be strong for them so they weren't scared. I couldn't bear them going through it . I never cried in front of them and I still do.
I hope that you all can find a way through this with some comfort and peace. I am always here to talk or listen as most of us are!
Shar
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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#52408 12-01-2007 02:04 PM | Joined: Jun 2007 Posts: 510 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Jun 2007 Posts: 510 | Andrea: So sorry to know that your family must go through this....We will certainly be thinking about you all during this time.
Keep us posted and lean on us if you feel the need.
Lois & Buzz
CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
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#52409 12-01-2007 02:46 PM | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2007 Posts: 632 | Andrea,
Am here and in similar position to your mom.
Have done, and am still doing, the whole 'brave thing' for my kids, both of whom are away--have just amnaged a transatlantic trip to make sure my daughter saw me 'looking well', probably for a last time.
Cry when you need to, you can bet your mom will cry sometimes--but not when you're there, if she can help it! It's just what we do as moms!
We LOVE you to bits, and want you to know how much, a mother's love is the most powerful in the world, but we don't want you to see us suffering.
Andrea--hang in there and keep visiting the site--we are all here for you AND your mom--and the relationship between you!
Brenda x
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
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#52410 12-01-2007 04:14 PM | Joined: Jun 2007 Posts: 221 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 221 | Andrea,
I know what it's like to hear the words that your loved ones cancer is back, but I haven't been told that there is nothing they can do yet. My heart aches for you and what that may be like. I understand how hard it is to be strong when you see your parent go through a difficult time. Your mom sounds like one strong lady, and I'm sure she has raised one strong daughter, even though you may not feel very strong right now.
Please know that you are not alone and that you and your mother are in my thoughts and prayers.
Joy
CG to Father, 75 yo with SCC of the mouth; upper maxillectomy and neck diss. performed on 5/23/07. Father also suffered heart attack during surgery and now has CHF. RT complete on 8/28/07. Cancer back 11/27/07. RT and Chemo to start on 12/17. Cancer back 6/17/08. Finally at rest 08/08/08.
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#52411 12-01-2007 04:46 PM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hi Andrea
having been where you are just a short time ago,i just want to say dont be afraid to ask me any questions that you like no matter how dark.My e-mail address is in my profile and i am in the UK as well so only a phone call away.
Please take advantage of the superb palliative care teams available (Macmillan services)it really is a whole 24/7 family support and not just patient care.The one thing they are superb at is pain control and provide a huge shoulder to cry on for you and other family members.
When the pain starts to get bad a short stay in a hospice facility to get a pain management regime established will be invaluable and supportive,and usually only requires a few days .
Dont leave these things Andrea,get everything in place now so it will kick in a soon as you need it.
Where abouts in the UK are you situated?
One thing i would like to say is listen to your Mum.This is about what she wants now and how she wants to do it.There will be times you want to shout and scream things like "dont give up" or you may wonder why she doesn't want to fight it anymore or doesnt want to see people or to eat anything or sometimes even speak to people.
Take some time now while things are still ok to find out exactly how she wants to do this and then respect her decisions and assure her you will follow them to the letter,no matter how hard that is for you.She will have a more peaceful and calm few months if she can relax and trust that you will do as she asks.
When all that is done ,savour every moment because for a while these next weeks and months will become your most precious memories and will have to sustain you through some very dark days after she is at peace.
love and strength
liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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#52412 12-02-2007 06:00 AM | Joined: Feb 2007 Posts: 8 Member | | OP Member
Joined: Feb 2007 Posts: 8 | I am overwhelmed that you guys take the time to reply.
Thank you, your words bring on my tears, but your words mean so much coming from people who really know how it is.
My step Dad is 82 and earlier this Mum came and stayed with my family for about 4 mths, this was hard on my Step Dad as he missed her so much but he could not give her the level of care she needed and we could not cope with them both (his daughter lives round the corner from him).
When she went home I tried to get help for them but it all seemed so slow and such hard work, that betwen us we did our best and as Mum got stronger things got better.
Do you think now that it is teminal she will get the help she needs to be able to stay at home.
The big problem is if she gets to week to take her food and medication via her PEG who will do it when she has so many time slots during a normal day.
Will nurses come in 4 / 5 times a day, I can't see how she will managed to stay at home and I know that where she wants to be.
Do I start making noises now and who to? | | |
#52413 12-02-2007 07:07 AM | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2007 Posts: 632 | Andrea--your first port of ncall should be the MacMillan nurses--you should have been 'allocated' one at the hospital and given a number---don't hesitate to ring!
They provide both practical and emotional support and will help you fill in any forms which will help mum get the care to which she is entitled.
Also, contact the GP surgery AND Social Services, so everyone knows what is going on and needed.
A visit to a local hospice with her might be a good idea--Cookey will tell you how good they are and what a blessing it was for her Robin.
You are in my thoughts during this sad time,
Brenda x
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
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#52414 12-02-2007 11:34 AM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Andrea,
I do not have alot of personal experience with having to deal with terminal illness, even when My grandmother passed it was unexpected. But there are people here who can see you through.
As far as Us all being here to repsond....There is NO PLACE I would rather be . After all this site and people on here have done for me ..this is the least I can do , But I also want to . It makes me feel better, Not that anything I can say can make you feel better or change it . But I do want you to know my thoughts are with you during this difficult time
Shar
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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#52415 12-03-2007 03:44 PM | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Andrea, my Mother went thru same thing,, just make her life as enjoyable as possible.. I took ,mine anywhere and everywhere she wanted to go and tried my best make her smile.. you have all my prayers
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 510 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Jun 2007 Posts: 510 | Has anyone heard from Andrea?
Lois
CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | she sent me a long e-mail a while back Lois in which she asked all the questons that were troubling her.I answered as best i could and she replied and sounded very positive.she has talked to her Mum and i think will be busy doing everything she can to carry out her mums wishes and spend as much time with her as she can
love liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Jun 2007 Posts: 510 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Jun 2007 Posts: 510 | Kindly let her know that she is in our thoughts and prayers.
Love, Lois
CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Liz,
I always have pictured you a little more staple than the Avatar you selected.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | LOL David,, it does look a lil different. Maybe there is something we don't know about Liz.. maybe an acrobat in a past life.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | And she always bounces back up!
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Cheeky beggars .The avatar was chosen more for the connection to my size!!!!!.I will say no more on the subject,and David .......perhaps you better not either 
Last edited by Cookey; 01-10-2008 06:11 PM.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Sounds like Liz just made you a promise David.. LOL
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | I found that avatar on the web and loved it. I have been adding new ones to the site as I come across them, funny when possible, serious most of the time. But this is definitely (with the penguins) one of my favorites. Obviously the web is full of these things, most not appropriate for a cancer site.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Hmmmmmmmm should I cross that line or not ??
Gotta think a bit on that one. Gotta remember what my mom taught me. I'll be back.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Liz, I actually thought your avatar related more to achieving the impossible...i.e. elephants doing gymnastics. I thought, for me, as a caregiver, an avatar of someone juggling bowling balls would be appropriate.  Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Deb - here's one for you if someone can put it in the avatar list: http://webpages.charter.net/xila/jester1.gif
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Anne Marie, Thanks..cute, but those balls are much too small...somebody make them bigger! Once again... Deb Oh, and I think I am sorry for hi-jacking this post as it is way more important than avatars...let's move the discussion to the AVATAR post everyone: http://www.oralcancerfoundation.org/forums/ubbthreads.php/ubb/showflat/Number/67091#Post67091
Last edited by debandbill; 01-11-2008 07:58 AM.
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | OK, Deb - Sorry - I didn't know you wanted BIG balls!  If I find some, will let you know.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Deb sounds like you need to speak to David.  David...be afraid be very afraid!!!
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Yeah I wouldn't want that thing jumping up n down on me !!
Last edited by davidcpa; 01-12-2008 01:38 AM.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I'm just sitting here laughing at the big balls. Can I watch you juggle them? LOL
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: May 2006 Posts: 69 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: May 2006 Posts: 69 | Andrea,
I know its a tough, I'm in the same spot with the same time fame and just trying to make everything things as comfortable as I can for mom. I guess we can only take it one step at a time..
the world brought me to my knees...
Update: Feb 10/08: Mom passed away on Jan 31,08 - infection (unknown) in her lungs with her weakened immune system resulted in cardiac arrest - T2NO SCC of tongue surgery 6/30/06, SCC left neck and lungs detected Sept 07, 7 weeks rad/3 rounds chemo had no effect.
| | | | | Joined: Jul 2007 Posts: 18 Member | | Member
Joined: Jul 2007 Posts: 18 | Does anyone know how Andrea is or what happened with her mom? Has she moved somewhere else on the board?
CG to mom (non smoker) during treatment. Dx 7/07 SCC side and base of tongue, Stage 3/4, T4, N1. Refused surgery. Completed tx (41 rads, 8 chemo) 10/07. PET on 1/9/08 showed active cancer. Fought bravely until the end -- 2/12/08.
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